These shots are titled Vulnerable and Pain and Vulnerable at 3:30. February when she had to get a MRI and the 17th of this month are only two times I've seen Joey without piercings in 24 years. Life got real for us, especially Joey when shed had to lose her armor...even for a few hours.
Let's talk about sleep deprivation, shall we? Over the last coupled years, Joey's sleep patterns've become erratic, and thereby mine. Hers by pain that wakes her from a presumably deep sleep, and me, because I tell her to wake me when she's woken. Can I do anything to get rid of the pain, no, but I can definitely be there for her for support. Of course, she tries not to wake me saying I'm no good to her if I get sick from not sleeping, which's super sweet, but, still... It's a sweet, but vicious cycle.
So, here we are, Wednesday the 16th, we had to be up by 4:30 to get Joey to her pre-op stuff, which we didn't get much sleep because Joey's pain and nerves, then, we had to be up by 3:30 and out the door no later than 4:30 to get Joey to the hospital by 5, barring Dallas traffic, for MORE pre-op and whatnot BEFORE her surgery TWO HOURS LATER!
Waiting in line
Getting another EKG and BP check
Waiting on the anesthetist and Dr. Collett
to give the run-down
Having a spasm
Getting the IV started.
It took two nurses and three goes.
Getting the run-down about the anesthesia.
Dr. Collett giving the surgery run-down
and answering questions.
Then, it was go time...
I've had plenty of surgeries from more shunt revisions than I can count, from hydrocephalus (fluid on the brain) that sometimes comes with people with Spina Bifida, since I was a baby, spine fusion, gut surgery (by far the worst), and muscle-movement surgery on my right arm. None of them scared me with the exception of the shunt revision I had after my brother died in '00 after he had a shunt revision (the surgery was picture perfect, the post-op went sideways when he contracted Adult Respiratory Distress Syndrome twice 18 months apart, the second killed him). Joey's surgery was the second.
Joey went to the OR, and we went to the waiting room with all the others waiting to hear about theirs surgeries. I passed the time talking to a provider and doing some life photography, so I wouldn't get in my head.
while we waited.
I don't know if it was the same one.
Finally, Collett came out after about an hour, maybe a little more to say everything went smoothly, and that I could see her in recovery.
It was a good couple of hours before they had a clear, clean room for her. The interesting part of this whole bit was the staff'd driven Joey's chair wherever she was going to recovery from prep instead of finding out how to put the chair on manual...SMH. So, when they got her a room, I told them how, after asking Joey (LOL), because, even with all the shit I've done to my chair, which includes splitting the chassis (the repairman'd NEVER seen that before), I'd never had to put this particular chair in manual. Then, we had to wait for an elevator.
7th floor, room 791 was home for the next 24.
right out of Joey's window.
reunited with her piercings.
I fully intended to sleep in my chair at the hospital like I'd done at home when Joey had to stay when she had staph, but the rules are different at William P. Clements Jr. University from Midland Memorial. Where as I could stay with Joey overnight myself at MMH, I had to have one of our providers stay with me in Dallas. Needless to say, the provider that got to go back to the hotel for the night slept for the three of us, but I did get to lie down on the little couch to get off my butt, which I'd been on more in the last 24 than I'd been in a long time, while Joey's provider slept in the chair. I didn't sleep listening for Joey.
We didn't sleep much,
nothing serious, just a lot of pain.
Like I said, I've had gut surgery for bowel obstruction as well as sometimes when the part of my shunt that drains to my abdomen messes up. It's THE WORST...even more so than getting my head cut open for the actual shunt! So, I know about muscle getting cut and the associated pain that comes with said surgery. I liken Joey's surgery to my gut surgery, just in a different place since they had to cut her hip and cheek muscle to do the resection, and use the surrounding tissue, muscle, and whatnot to pad the new gap between her hip and where the femoral head used to be. I impressed on her how important it was for her to eat to show the nurses and Collett that she could go home, of course with home health.
After breakfast, we were kind of cooling our jets waiting for PT/OT and Collett to see if they were going to do any therapy to get her loose for the trip home since insurance was only paying for a day stay...because, for some fucked up reason Girdle Stone Resection's considered ELECTIVE! WHAT THE HELL, MAN, HOW CAN THEY DEEM A SURGERY THAT AMPUTATES PART OF THE SKELETAL SYSTEM TO RELIEVE PAIN AND MAKE QUALITY OF LIFE BETTER ELECTIVE?! It's not like she's going to CHOOSE to be in debilitating pain for the rest of her life where she has to rely on people for everything she used to do by herself on the day-to-day!
Anyway, we went to Dallas, because we heard they dealt with CP patients more so than Midland. Collett maybe, the hospital staff, at least where hip surgery's concerned, that's a HARD NO. We watched the Barbie Movie while we waited for them to get their shit together.
See the uncomfortable look on Joey's face? Yeah, until then, she'd NEVER sat on the bed like that. What's more, the OT, when she finally came, thought she was a walker! OYE VE! Then, we had to wait for the PT, who was never told Joey was at that particular hospital. She was a little more helpful with ideas, and she scored us some stuff that were helpful.
The first time Joey was in her chair post-op.
We thought we were going home then, but not for ANOTHER COUPLE HOURS! Discharge was so disjointed and unorganized, we floated the idea of staying another day...insurance be damned. I swear the nurse wasn't coming back to the room to bring Joey's discharge papers, because when we came out to see what the hold up was, she got up from her station to bring said discharge papers. We half-assed listened to her spiel, then, were off to the pharmacy to get her Oxy, stool softener, and baby Aspirin to prevent blood clots. Finally, we were on the road about 5...JUST in time for 5 o'clock Dallas traffic, which we were TRYING to beat.
Jory has to be REALLY exhausted
to sleep in her chair,
which she's done A LOT of in the last two years.
When we were in Abilene, the halfway point, Joey's already been up for, like 4.5 hours, which, even for me, is insane on a first go after surgery, she said she was hurting while we stopped to gas up, so I asked her if she wanted to tap out and stay the night, and we could finish in the morning. She said no. I found out later, she felt the consensus was to just get home...meaning the providers. I was on Joey's schedule since she's the one who'd just been cut up in the last 24. We got home about 11.
We'd been in bed when Joey couldn't stand the pain anymore, so our neighbor, Amanda, who'd helped Joey and stayed trying to settle her, and I called it and called 911, which they came at 3:40 with Amanda volunteered to go with Joey while I stayed with The Boys and waited for word. 4.5 hours later, Joey came home with a diagnosis of med constipation and a "slight" UTI.
Since then, she's been fighting/crying sometimes through healing pain making strides every day by herself (she was evaluated for rehab, but they've since been MIA), even small ones...baby steps. Wednesday, she goes back to Dallas by taxi for her post-op and get her wound vac, that was meant to suck out excess drainage to prevent infection, off.
Update coming...
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